Well...

I seem to be a day behind on posting updates, and so this would have been an update from our day yesterday. However, considering things haven't been going so well, I guess I can bring things up to date.

Yesterday morning we had planned on going to Disney's Hollywood Studios (MGM) first thing. The kids had other plans. They love the Village so much that they didn't even want to go to the Parks. Since we have been to the Disney Parks before, we decided to just enjoy the Village in the morning. The kids had a blast running around and playing with all of the great things here. And yesterday morning the Disney Characters came here for Meet and Greet and it was nice not having to fight the crowds. We ended up not getting to Hollywood Studios until after 2pm. That is when things went downhill for Emily. She had another one of her headache episodes. That had made three of them since arriving here. She also had been complaining of being dizzy on several occasions. The only thing we can attribute it to is the flying since it all started after we got off the airplane. Because of this, we decided that there was just no way that we could fly home on the airplane. We were working on figuring out a way for us to get back home. We couldn't risk putting Emily back on that airplane. The strangest thing with her is after her episodes happen. She gets over them so quickly and is totally fine after that. The headache is gone, she is no longer lethargic, and she is ready to go and play. We, on the other hand, are stressed and still trying to recover from seeing her like that. It is so hard to deal with these things. It's especially hard because we thought that we were past them after her surgery earlier this year.

Today started out great. We had a Meet and Greet with SpongeBob and Patrick here at the Village and then the kids went horseback riding here. After that we got packed up to head to Epcot. The kids were so excited because they just LOVE Epcot. We immediately went in and went into the V.I.P. lounge for wish families at Spaceship Earth and then got in the back entrance on the ride. That ride was a huge hit. After that we headed over to Soarin, another big hit. We did a few more things and went straight to the countries. Emily and I had a goal to eat some desserts from each country. First we had to eat lunch and then we were planning on starting our quest. That is when all heck broke loose. Not long after we ate lunch, and Ethan and Emily sat on Santa's lap, Ethan was suddenly stricken by a horrible stomach bug. He has been violently vomiting all afternoon and all evening. His stomach is just convulsing and the poor thing is so miserable. Between Emily's headaches and Ethan's stomach bug, this dream wish vacation is turning into a tragedy. I am so sad for Ethan that I just want to cry. We have one more day of Disney passes left that we were planning on using for Magic Kingdom tomorrow. I'm so scared to use them tomorrow if Ethan still isn't feeling well. We may wait and use them on Thursday and just pray that this illness is a short one and that none of the rest of us catch it. We also have two days of Universal tickets that may not even get used at all.

We need prayers and positive thoughts that Ethan has a very speedy recovery!

Sea World

Yesterday we went to Sea World. It was the first time for all of us. Even though we did enjoy that park, I'm very glad we went there first. There are a lot of shows there. The kids don't do well with shows. They never really have. They can tolerate a couple and then they are finished. Because of this, they didn't see as much at Sea World as I thought they would have because they just didn't want to sit and wait to watch the shows. They loved the Believe show with Shamu and they really loved feeding the dolphins. That was a wonderful experience. Emily did have a little mishap, though. As she was holding a fish out for the dolphin, a bird swooped down and grabbed it out of her hand and managed to cut her finger with its beak. She was quite upset. The kids also enjoyed riding the kiddie rides at Sea World, but their favorite was the Polar Express ride. That was fantastic. It was a simulator type ride, kind of like Soarin at Epcot, but on a train instead of a hang glider.

After we got home from Sea World, we headed over to eat dinner and then enjoy the activities in the Village. They had a life-size Candy Land game. The kids loved it. Ethan was being chased along the board as he played by a big gingerbread man and it was so cute. Of course, you can't have a party of any kind here at the village without Mayor Clayton and Ms. Merry, those adorable huge bunnies. Once Emily spotted Ms. Merry it was all over. Emily became Ms. Merry's stalker the rest of the evening. We couldn't stay for the whole party because we had scheduled for Mayor Clayton to come and tuck the kids in bed last night. Wow! What an experience that was. How they expect the kids to quietly go to sleep after that is beyond me. :) They loved it!

Give Kids the World Village

We arrived yesterday afternoon at Give Kids the World Village. This entire place was created for families to come to that have children that have been suffering with medical conditions. It is meant to give them a vacation away from the stress and worry of everyday life. Well, I am here to tell you that it is successful. This place is INCREDIBLE!!!!! Even that can't really describe what it is like. Not only is our entire family treated like we are royalty, everything we do and everything we get here while on property is free of charge.

Our Villa is beautiful. It has two bedrooms and two bathrooms, a living room and a full kitchen. It has a laundry area with a full size washer and dryer. It is decorated outside with Christmas lights, it has a front porch with rocking chairs, and even has our name out front on the mailbox.

We spent the afternoon playing all around the village. Ethan loved driving the remote control boats in the pond at Amberville along with seeing the HUGE model train village they have set up. The kids also loved the game room at Amberville. All the air hockey and Chuck E Cheese style games they could stand. We also enjoyed some fun in the Castle of Miracles where there were lots of games and magical surprises around every corner. Also at the Castle of Miracles is a much loved Carousel for all the rides you can stand. And we can't forget the Ice Cream Parlor where you can go at any time of the day and get an ice cream sundae. I think we had a few of those yesterday. But one of the best things ever is the amazing playground. It is a life-size CandyLand game playground with the biggest and most amazing playground equipment I have ever seen. And to top it off, it is handicap accessible to all children.

Each evening there is a special celebration they have going on at the Village. Last night was Mayor Clayton's birthday. Mayor Clayton is a 6-foot bunny rabbit, and the Mayor of The Village. That was one heck of a party they put on for him and I was surprised that the kids were able to stay awake for it despite the fact that the kids had been up since before 4 am that morning. They were working on pure adrenaline.

There was lots of dancing in the streets, and as usual Ethan got his groove on. That boy just feels the beat through his body. Emily had a lot of fun dancing, too, but she was a little shy at first.

Of course, dancing with Mayor Clayton and his wife, Merry, was a lot of fun, too. Emily is totally smitten with Ms. Merry and won't leave that bunny alone. She is like a stalker to that bunny. It is adorable. It is great to see how much they really encourage the kids to keep it up, too. I almost had to pull Emily off of her. And Ethan, my little hugger, would hug anyone and everyone that he even thought was connected to a character.

The day today was spent at Sea World. That entry will have to wait until another time.

The Plane Ride

Our day started at 3:45 am. That is just too darn early, especially since I was up packing still at 11 pm. We got out the door without a minute to spare to get us to the airport in time. About halfway to Pensacola, and without a gas station or anything else around, Ethan starts saying that he needs to throw up. His nerves were doing a number on him. From the excitement of the trip, the anticipation build up of several months, and the nervousness of flying, he didn't have a chance in the world. While Rob was driving down the road, I was scaling the front seats and quickly holding a bag in front of Ethan to catch the vomit so he wouldn't dirty his only pair of clean clothes. I was having visions of us missing our flight because of needing to dig out clean clothes to change him into. Thankfully, we made it to the airport, Ethan survived and we got on the flight.

The first leg of the flight went well and we had no problems at all. We flew to Atlanta first. We were concerned about how Emily would handle the plane ride with her shunt, but her only complaint was being dizzy after landing. On the flight to Orlando she fell asleep and slept through it. Ethan did fine until the descent. He then started screaming about his ears. He really started crying and having difficulty. We gave him gum and tried everything we new to do. Once we landed he was fine again. Emily complained of dizziness again, but didn't seem to be having problems at that point. The dizziness didn't seem to last a long time either. She was fine the rest of the evening, well that was until bedtime. She ended up having one of her headache episodes last night at bedtime and it was the kind with vomiting. It was very quick and then it was over. I don't know if it was from the flight or just from being over tired, but it happened.

When we arrived in Orlando, there was somebody waiting for us with a sign with Ethan's name on it. Ethan was very excited to see that. It was nice to be escorted where we needed to go to get our luggage and rental car. Our Villa at Give Kids the World Village is beautiful and like a house. It is huge.

I will post another update later today to talk about how amazing the Give Kids the World Village is. It deserves a post all on its own. We are heading out to Sea World today and will be very busy and tired. The fun has started!

Disney...Here we come!

Here it is, 10pm, and I am STILL packing. We probably won't even use half of what we are taking. It's just crazy!!!

The kids are so excited and can't wait to fly on the airplane tomorrow. I'm a little nervous about how Emily will handle the pressure changes on the plane with her hydrocephalus since she is sensitive to pressure changes anyway, but we have to just see what happens. Tomorrow will be a big day and I should probably get some sleep since my alarm is set to go off at 3:45am. I wonder how long I'll have until I have a couple of kids crawling in bed with me tonight because they can't sleep...

Pulmonolgy Update

Ethan had to go to the pulmonologist today for a check-up. The appointment should have been made back in October, but things were very hectic back then with other things going on and by the time I called to make the appointment, the soonest they could get us in was in November. And then I had to call to change that appointment because we had to go out of town last week to see Rob's grandparents. Luckily, we were able to get in today, before heading to Disney. Actually, it all worked out better this way. If we had gone back in the early part of October, I would have told Dr. Maupin that Ethan's medicine, the Symbicort inhaler, was doing a fantastic job in controlling his asthma related symptoms. I really thought it was. At least that was until he had that horrible illness at the end of October that really threw him for a loop and almost sent him to the hospital. I explained to the doctor how Ethan had to go on Orapred because his sats were dropping into the 80's and how he has never seemed to fully recover since then. I also explained how the Xopenex inhaler is useless with a illness, and that I really question now whether Ethan is even really proficient enough with the inhaler at all to use it, even with a spacer. We talked some more about Ethan's symptoms and what has been going on since the illness. He is putting Ethan back on another round of Orapred because he thinks that maybe the first one wasn't strong enough to heal his lungs after that illness. Also, he is taking us him of Symbicort and putting him back on Pulmicort, but at a higher dosage. Ethan will take 1 mg of Pulmicort two times a day through a nebulizer. Of course this now means that we will have to pack up the nebulizer and all tubing and meds to take with us to Disney. Dr. Maupin also did some more lung function tests on Ethan today and sent him down for some chest x-rays. One thing that I have to say is that I absolutely LOVE this doctor and this hospital!!



It was a big day for Emily today. She had to go to school all by herself for the first time today. This was a huge milestone!!!! She wasn't worried about it at all or upset at all this morning. As we were driving to school, Ethan said to her, "Don't get upset and cry as you are getting out of the car, Emily." I just quickly tried to change the subject because I didn't want him to make her cry. She was very brave and didn't show any hesitation at all. She got right out and waved to us and walked her way into the building. Ethan, on the other hand, was sitting in the back seat and had his eyes welling up with tears. He told me that he was going to be worried about Emily at school by herself. He kept asking me what time it was and would try to figure out what she would be doing in class right then. He even took her stuffed animal that she left in the car and he buckled it into her booster seat. He would look over at it on our way to the hospital and would get sad and say that seeing Rudy sitting there made him think of Emily. It was really quite pathetic and very sweet all at the same time. He ended up surviving the day and so did she. Emily did tell me that she got sad and started to cry a couple of times during the day, but that most of the day was a good day.



We only have one more full day until we leave for our trip. Rob and I have been packing like crazy tonight. We haven't flown on a plane since the Sept 11 terrorist attacks and so all of this new security stuff will be new to us. I'm not really sure what all to expect. I'm sure we'll be that crazy family with kids that holds up the line that everybody behind us just hates to see coming. ;)

The countdown is on...

We only have a couple more days until we leave for our Disney trip. We are all so excited!!! The suitcases are ready to be packed and I am working on getting the laundry done. Our flight leaves Pensacola at 6:50am on Saturday morning and so we will have to be up early. The kids and I already decided that we just probably won't even sleep the night before because we'll be just so excited. I got a phone call from somebody at Give Kids the World Village a couple days ago and they were confirming everything and they said that somebody would be waiting for us in Orlando with Ethan's name on a sign as we got off the plane to greet us. They will lead us to the rental car agency and make sure to get us where we need to go. To put it in simple terms, we will be pampered while there and treated like royalty.



Tomorrow I am taking Ethan to the pulmonologist to get his lungs checked out before we leave. He really has had a hard time after his last illness and I just want to make sure that everything is okay before we leave on this trip. One thing I learned is that he can't take his Xopenex in inhaler form when he is sick. We will have to go back to using the nebulizer for his Xopenex medicine. I'm wondering about his Symbicort because of this, too. We'll see what his doctor says tomorrow.



Emily must be going through a growth spurt right now. She is really struggling with falling down a lot lately. I'm finding that I'm having to hold her hand a lot more when walking. I went in today to mention it to her teacher because I felt like I needed to warn them to be on the lookout for her to start having some accidents. I am especially worried about the lunchroom and her carrying her tray. I was talking to Sunny this morning (one of the substitute teachers) who was helping out Ethan and Emily's teacher and I was telling her about it and she told me that Emily did have an accident yesterday on the swing on the playground. She said that Emily just fell out of the swing for no reason. Emily did tell me today that somebody carried her lunch tray for her today. This growth spurt couldn't come at a worse time with the amount of walking that we will be doing in Orlando.



Emily did something exciting at school today. She took her first AR test!!!! Actually, she took two of them. Each book she tested on was worth .5 points, so she currently has 1 AR point. Also, she needs to choose books up to a level of 1.8-2.8 (blue books). That means that her reading level is a minimum of 8 months into the 1st grade year to 8 months into the 2nd grade year. Or, in easier terms, almost the end of a second grade reading level. Now, this level was determined according the Star Assessment test she took and I know that it wasn't totally accurate because I sat with her while she took it. She didn't pay attention during half the test and it wasn't until I told her that she better start paying attention and doing the test otherwise the teachers would think she was still reading on a Kindergarten level. That was when she jumped up and started paying attention. Getting this Accelerated Reading program off the ground has been a huge thorn in my side. Well, not only my side, but also our teacher's side, too. The person that was in charge of doing it for the kindergartners was pulled to help out the second graders and that meant that they had nobody available for the kindergartners. And I really don't think they had any intentions of doing anything about getting anybody for them either. I will hold back my opinions right now on why I think this is all going on, but it is. I have stepped up and volunteered for all of the kindergarten classes to handle the AR program. I will be working with the children and helping them earn their AR points. Of course, it helps out Ethan and Emily, too.